Spring is in the air! Yeah for warmer weather, but yuck for allergy season!
My doctor appointment went ok in March. My PFTs were around 89, I believe, which was lower than the last time, but I was not feeling well during the visit. Everything else was good though. Praise God!
The Docs switched my pancreas enzyme medicine from Pancreaze to Creon due to insurance demands. I was nervous about the change since I had been taking it probably over 10 years, but fortunately, I haven't really noticed a difference since I started a few days ago. So that's great.
Recently in CF news - Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation sent an email out stating: "The Foundation has announced a $14 million expansion of its research agreement with Genzyme, a Sanofi company, to support development of new treatments for people with the most common CF mutation, F508del. (I have two copies.)
The agreement will support research programs aimed at identifying compounds, known as correctors, that could potentially fix the underlying cause of the disease. During the expansion phase, Genzyme will focus on further developing select compounds to advance them into CF clinical trials."
This is more big news for CF patients! Keep the studies going and get those meds out to us!! Thank you to all those who do put time into studying and developing medicines that will help us live better lives. Also, thank you to those who financially support their efforts.
I wanted to encourage you to also help people like me and others with untreatable diseases to voice your support of clinical drug trials. The Improving Access to Clinical Trials Act (IACT) will expire in just 6 months! This important law allows those with rare diseases, like cystic fibrosis, to participate in clinical trials without fear of losing vital health benefits.
Members of the House and Senate have introduced the Ensuring Access to Clinical Trials Act of 2015, which would remove the expiration date from IACT and allow it to become a permanent law. Please tell Congress to Pass the EACT ACT! (click that phrase).
Have a wonderful weekend my friends!
Link to Full Blog: Jen's Breath of Life Blog
Send private messages to Jen in the "Contact Jen" section on the right.